I figured that since I started this new website, I should introduce myself and let you know a little about me. This site is not only a way of enabling me to blog, but also a way to fundraise money for life-saving treatment that I desperately need in order to stay alive. I am rapidly deteriorating and unfortunately, my treatment is too expensive for my family to afford alone. So… unless I receive donations, I won’t be able to get the very much-needed lifesaving treatment that I desperately need. I also wanted to always make a difference in the world and therefore, I am hoping that this website will also bring awareness to my illness, which is rare, extremely painful and debilitating, and life threatening.
This blog is about coming to terms with the life you have. I would like to tell you all about me without mentioning illness once, but that isn’t the life I have. Unfortunately, I have been struck with life-threatening illnesses that are extremely painful and I will soon die from unless I get help from. I suffer from Reflex Sympathetic Dystrophy, severe dysautonomia, severe gastroparesis, osteonecrosis, and a pituitary brain tumor.
It is very hard to actually understand my illness because it’s not easy for people to see. My entire nervous system is basically out of whack, and the part of my brain that controls my autonomic nervous system (which controls all the body’s autonomic functions) doesn’t work properly.
Dysautonomia is malfunction of the autonomic nervous system. The autonomic nervous system controls the “autonomic” functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control. People living with dysautonomia have trouble regulating these symptoms and can result in various problems like I have such as fainting, unstable blood pressure, abnormal heart rates, malnutrition, and even death.
The autonomic nervous system is composed of two branches: the Sympathetic Nervous System (SNS) and the Parasympathetic Nervous System (PNS). The SNS controls the more active “fight or flight” responses such as increased heart rate and blood pressure, whereas the PNS can be thought of as the “rest and digest” part because it slows down the heart rate and aides in digestion. In a healthy person, these systems are balanced and react correctly to outside stimuli, such as temperature, stress, and gravity. When they are out of balance and do not function properly, autonomic dysfunction (or dysautonomia) occur. People with dysautonomia, like me, have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, bradycardia, gastroparesis, and more
I never thought that this would happen to me. I was always a happy, intelligent, and competitive person. I received excellent grades, was a competitive figure skater, a superb violinist who was Concert Mistress and even scored a perfect score on the highest level of competition, and had a wonderful social life. I even aspired and dreamed of becoming a doctor so that I could help others. However, what my life was up through high school and what it is now has done a total 180.
I was diagnosed in college with this illness. Even though I did have symptoms prior to having foot surgery in college, it definitely became apparent that I had this illness after I went for that surgery because so many aspects of my autonomic nervous system were demanding attention. I became crippled with pain 24/7, my GI track shut down, I was fainting, I received pain signals that were way out of proportion, etc. It appeared that my entire body was on a “fight or flight” response and it couldn’t be shut off.
My disease has been progressive and it hasn’t been easy to watch my life just be taken from me. , I have spent the last couple of years incapacitated, paralyzed, and unable to sit, walk, or even eat. This disease is excruciatingly painful all throughout my body 24/7. It is like being electrocuted or stabbed, as well as having flaming hot gasoline being poured on me. RSD is characterized by: continuous sharp, stabbing & burning pain; extreme sensitivity to touch; severe headaches; painful skin ulcers; intense muscle spams; softening of bones; dystonia; skin temperature & color changes; hair/nail growth changes; muscle atrophy; vascular & Autonomic dysfunction; sensitivity to lights & sounds and paralysis. The slightest touch, even the caress of a loved one, the kiss from a parent, the touch of the sheet on the foot, the tightness of a sock, sometimes even the very breeze itself blowing over the body, can cause such pain it will bring tears to my eyes.
Eventually according to doctors, I will have catastrophic autonomic failure. That means an end to even the most important Autonomic Nervous System functions… even breathing. But, that is something I am hoping to delay and hoping to avoid. That is why I am begging and pleading for help. I desperately need medical treatment, but unfortunately we cannot afford it. That is why I am asking for donations. It doesn’t matter how much is donated because all is appreciated. Even $1 is one less dollar than we have to come up with.
So in the meantime, I am busy trying to hold on and praying that I will be able to receive the treatment that I need to save my life. I am building memories not only for myself, but so my family will have them as well. I am only hoping that I will one day regain the life that I was robbed and I will be able to become that doctor that I always dreamt of being so that I can help others and they won’t have to suffer like I am.
Sometimes it is hard for people to grasp how very sick I am. I try my hardest to look my very best because I believe that if you “look good… you feel good!!” So beneath all that makeup that one sees is a person that is very ill and needs desperate help NOW.
The New Year is quickly approaching and that means that it is a time to start over. I only hope and pray that this will be my year… a year that I will be able to get well and am normal. It better be because I don’t know honestly how much more of this I can take. My body is just giving up. My entire GI track is basically ‘dead.’
I also have severe autonomic dysfunction and severe Gastroparesis, as my small and large intestines, stomach, and esophagus are all paralyzed and I cannot swallow. Gastroparesis interferes with digestion, causes nausea and vomiting, and causes problems with blood sugar levels and nutrition; I cannot keep any food or liquids in me, and I vomit constantly. Doctors tried TPN on me and other ways of feeding me, but they all failed. My body is just shutting down. As a result, I have dwindled down to weighing only in the 60 plus pound range and having a BMI of about 10.8. In addition, it is causing me to aspirate into my lungs, which is leading to difficulty breathing and can cause life-threatening pneumonia. Doctors do not know how I am currently living with all that is happening to me, but I am still pushing on and hoping for a day that I am ‘cured’ and able to live my life to the fullest!
Despite medications and treatments, I just continue to deteriorate. In terms of procedures, I have undergone surgeries such as implanting a stimulator (which had to be removed), sympathectomy, epidurals, Botox, etc. I also tried aquatherapy, blocks, physical therapy, occupational therapy, massage therapy, acupuncture, ketamine infusions, and hyperbaric therapy. I take over 50 pills and injections daily just to get by. Such medications include laxatives, morphine, dilaudid, ketamine and more. My medications are extremely expensive and I can’t even get them all in the United States. This forces me to pay all out-of-pocket for them because they are gotten in other countries.
Many doctors have told me that the amount of medications that I am taking would be enough to “kill a horse”—yet they have had little to no effect on me. I have even been undergoing weekly ketamine comas just to try to alleviate the pain and hope that the disease doesn’t continue to spread like a wildflower. I have deteriorated so much and the pain has been so profound that I must undergo the most extreme and expensive of therapies—being placed under a Ketamine coma—to hopefully reset the pain connections of the body and fix the nervous system. This coma in Mexico is considered for patients with the most severe, intractable cases, who have exhausted all other reasonable treatment options. During this procedure, patients are put into a ketamine-induced coma– essentially shutting the body down & giving it time to “reset” the nerves, brain and spinal cord. The hypothesis is that ketamine blocks the neurons and manipulates NMDA receptors which shuts down the nervous system, allowing damaged nerves cells to heal and “reboots” the patient’s brain, much like a computer. Patients are supported by a ventilator and monitored in the ICU. There are significant risks, but it continues to be my only hope because there are really no other options available. For the patients that have had it previously, it has worked “miracles.” Unless something is done soon, I will die.
But unfortunately, the amount of ketamine that I really do require is not FDA approved and can only be done outside the USA, which is in Mexico. I would love to go to Mexico to have this radical coma, but unfortunately it is so expensive and will cost us over $100,000. So I am only hoping that through donations that one-day I will be able to get that coma because that is the only real way to “cure” the autonomic problem. I will be the 38th patient to undergo it.
But a more important and imperative treatment right now is that I get to the Cleveland Clinic for massive surgeries. Since I have severe gastroparesis, I cannot eat and my GI track is basically dead. I only weigh in the 60s. I need and require is a complete colectomy. I have toxins spilling into my bloodstream that is poisoning my organs and brain and shutting them down as well. Unless something is done quickly, I will soon die. I also require a multivisceral transplant, which entails getting a new stomach, small and large intestine, pancreas, and liver. However, we won’t know until the colon is removed how urgent it is needed to have that transplant because it is all dependent on what the small intestines looks like.
I am scheduled to have massive surgeries in Cleveland starting February 1st. However, it is all contingent on whether we have the funds. It is going to be extremely expensive, as we will be there for at least 6-7 weeks. In addition, my father will be with me during this time and as a result, he won’t be able to work and make an income during this time. So it will be even harder than ever for us to pay for something like this because he won’t be pulling an income. Not only can’t we pay for my current treatment, but also we exhausted so much money on my illness that the bills are just snow blowing out of proportion. We are having an extremely difficult time paying all our bills including mortgage, heating, water, phone, etc. Even putting food on the table is difficult because of the lack of money in combination with the high prices of food. But if I am going to have a chance of living, I have to go in February to have these surgeries.
What a way to celebrate a birthday! My birthday will be during that time, as it is February 7th. But what better present would there be than getting my life back? I am only hoping that this will be how it goes and how it works out.
I am scheduled to undergo heart surgery February 2nd, as I need to have central lines placed in me and calcifications removed out of the coronary artery. It is so important to have these central lines placed because of how ill I am getting. It will give them an emergency access port into me so that I can be given medications and everything. Plus, it will save me from being stuck all the time with needles. I not only need it because of how sick I am getting, but I need it for the upcoming surgery because it is extremely massive and will definitely need that “emergency” port. The doctors also want to use that port to deliver TPN to me for about 2 weeks prior to the massive surgery to remove my colon. Since I only weigh in the 60s, I really have no reserves to survive the surgery or to ‘recover.’ If I should get an infection, it would really be devastating. So the doctors are hoping that by giving me some TPN, it will help me better recover.
I have had feeding tubes in the past, but they have all failed me. I have had nasogastric tubes, G-tubes, J-tubes, etc. but they all haven’t worked because of how sensitive I am. I can’t tolerate anything that is “strange” or “foreign” from entering my body because it stirs up my autonomic nervous system and causes it to further malfunction. Even having an IV in me is a killer because I can literally feel the fluid running through my veins. No matter how little they titrate the amount, I can always feel it, and it causes me severe pain and discomfort. However, this time they are hoping by placing the TPN in a central line such as in the neck and directly into the heart in combination with keeping me on ketamine, they are hoping that I will be able to tolerate it. So we will see. We are keeping our fingers crossed.
I am having such a difficult time eating. Even the very few things that I was able to enjoy beforehand are not able to get down now. I basically just live on ice cream and egg whites… and even that is starting to get impossible to get down. Even medication is horrible to get down, so in a way I am kind of excited to get the Central Line because it will save me from having to swallow all those pills because they are getting so difficult to do so. Even drinking is getting to be impossible as well. I can only drink liquids that are made into slushies. The reason is that it slows the rate that it enters my body and the amount. Even the slightest amount that is too much or consumed too fast for my body will cause extreme havoc on my body and cause exacerbation of the autonomic dysfunction.
If all goes well, I will be having my colon removed on February 18th. It is a massive procedure and the doctors honestly can’t wait to get that colon out of me. It is causing me a lot of harm because it is not only ‘dead’ and extremely dilated, but it is causing food, drugs, etc. from not to pass through and as a result, I am getting toxins to spill into my bloodstream from the colon and it is poisoning my organs and brain and shutting them down. I am essentially dying because of my colon being so ‘dead’ and these poisons being spilled into my bloodstream.
That is why I have to go every week to the hospital to have surgery on my colon to get them ‘cleaned out.’ We do this to hopefully buy us time until we get to Cleveland and as a way to keep me more comfortable as well. Since nothing passes through the colon, this is the only way of removing whatever is in the colon and hopefully limiting the amount of toxins that are entering my bloodstream. My colon is also extremely dilated because nothing passes through and therefore it has to be decompressed through this procedure as well. The doctors are fearful that if I am not decompressed that I will end up rupturing my colon and going into Sepsis. If that should happen, I will die.
The doctors can’t wait to see what this colon actually looks like. It is so dilated and floppy that it actually takes more than one doctor to navigate through my colon. We usually need multiple people in the room to help the doctor because the colon is so floppy. Thank goodness in a way though I have such a ‘dilated’ colon because I have lots of intussusceptions and normally a person cannot live with them. However, due to how dilated my colon is, I have been able to live with them up until now. However, it has gotten so bad recently that I can no longer put it off and it just has to come out.
So we are hopefully heading to Cleveland for the mega surgeries February 1st. But in the meantime also we are supposed to go to Cleveland for the week of January 6th to meet with some doctors and finalize everything for surgery. I have to meet with the heart doctor, GI doctor, pain doctor, etc. So we really are hoping to receive donations for this as well because we really need help with everything.
It is a long exhausting road, but unfortunately I have no other choice but to undergo these treatments. I am severely sick and desperately need your help. The doctors are even talking about brain surgery and putting a machine in my brain. Yet, in order for any of this to occur and for me to continue receiving treatment, I desperately need the help of others because we are so financially burdened from my medical bills that we can no longer afford my medical expenses. Since no one does anything for free, I am only hoping that other people will understand where I am coming from and help to donate whatever they can so that I can receive the very lifesaving treatment that I need, as well as continue to receive the current medication regime that I am taking, which isn’t cheap either.
Christmas came today and I was hoping for a Christmas miracle. We really haven’t celebrated any of the holidays this year. We couldn’t afford to. I can’t remember the last time my family and I did anything FUN anymore. I feel so bad for what I have done to my family because they have also been suffering and going through this with me. They may not have had the physical pain of this illness, but they have had the emotional pain and suffering, and they have been by my side from the very beginning. I feel so bad because they are working harder than ever and they have nothing to show for it. No matter what they do, they can’t help me because it is way beyond them. We haven’t been on a vacation in so many years, I can’t remember the last time we went out and did a family activity, I can’t even remember the last time we had dinner out, etc. This illness not only wrecked my life, but the lives of my family as well.
Speaking of family… thank goodness for my pets. They really have been my best of friends. To think… I used have so many friends before I got sick. But you know how the saying goes… “You know who your true friends and family are when you are sick!” The amount of people who actually stuck by my side can basically be counted on one hand. It is said that I was always a person to be there for others and now that I need the help… I have no one. But at least I have my animals. They are especially special to me because since I don’t really go out, they are great to be with. My cat, Missy, spends the nights with me and literally ‘babysits’ me. She awakens my parents and alerts them to anything that might be happening to me. My dog, Max, is a great cuddler too as he spends the days on the couch with me. I also have a turtle named George who stays in the corner of his cage and watches me. My dad says that he stays in the corner so he can ‘watch’ me and also ‘watch’ television. Even though I take care of my animals, it really is amazing how well my animals take care of me too. I am really so lucky that I have them.
Please help me because I am running out of time. The doctors have said I am a “time bomb just waiting to explode.” It has gotten really bad recently, as I don’t really even have my “good” days anymore. I used to have a few good days every so often…not many but a few. But now… I am not even bouncing back at all. I just continue to go downhill and there are so many times that we don’t even know if I am going to make it through a day or night. Yet, we can’t even go to any hospital or see any doctor because there are very limited doctors and hospitals that are familiar and capable of handling my situation. If I go to a hospital or see a doctor who isn’t fully knowledgeable about my condition, they can really make me worse. I can’t be treated like a typical patient, as everything is “magnified” for me. A simple needle stick is like someone sticking a knife through me. A simple cold is like getting the flu for me. Any wrong move can really set off my autonomic nervous system, which can really end up causing further problems and even killing me. So we are forced to travel across the country to seek the help of specialists at places such as in California, Cleveland Clinic, Mayo Clinic, Florida, and Mexico.
In addition, even getting up is getting to be impossible. Although when I am around people, I try to look my best because I like to try to conceal my illness as much as possible, it literally takes everything out of me to get out of bed lately. I have literally been sleeping the days away because I am too weak to get out of bed. I basically am in bed by 9 PM and I don’t get out of bed until noon the next day. Then its medication, eating, vomiting, etc. and before you know it… the day is over already. Even though I was sick before, it is as if I have had all my energy zapped from me nowadays.
I don’t know what is up but it is scaring me because not only am I feeling so weak, but it is getting even more difficult to breathe as well. I have been aspirating like crazy and you can hear the mucous in my lungs every time I breathe. My dad tried to bring up the oxygen machine in order to try to help me to breathe, but nothing is working. I am just so uncomfortable and no matter what I do… I can’t ever feel better.
I am not going to lie that I am not scared for all these treatments. But for me, “scary” is thinking that I could spend the rest of my life in this condition, unable to walk, eat, or take care of myself!! I have lost even the simplest things in life that people take for granted… eating, walking, taking showers, even having “FUN.” My goal is to one day become a doctor. I will be a great doctor because when a patient comes to me and says, “Doctor, I am in pain and words cannot express how bad it is,” I will be able to say, “I know how you feel, I’ve been there too. So, take a seat and let me tell you a story.”
Well… I just wanted to really introduce a little what is happening and ask for your help. I have tried various ways of fundraising already, but they haven’t really worked. I tried contacting the media, writing on Facebook, etc. but you know how it goes… it isn’t what you know but who you know … and unfortunately I don’t know anyone. So I am kind of out of luck in that area and would appreciate it immensely if someone can please help me out. I really need as much help as possible and I am hoping that you will be able to help me whether it is by spreading this link to others, saying a prayer, or even making a donation. Remember… all donations are appreciative and no donation is ever too small.
Any help would be much appreciated. I have an ongoing blog with pictures at http://www.FallonMirsky.wordpress.com and fundraising site at http://www.gofundme.com/help4Fallon. A YouTube video is found at http://youtu.be/tRyEp1V6IGs and http://youtu.be/aDxDpsMck4Q.
I am also selling “livestrong” bracelets that are custom made to my disease as a way of helping to raise money and awareness for my illness. The bracelets come in two sizes (youth and adult) and in two colors (pink and blue). Each brackelet is $5 and all money goes towards my medical treatment. The bracelets say “Help Fallon Fight” along withmy website. If interested, please contact me at Femirsky@gmail.com
Happy Holidays and Happy New Year.